A special need - High school becomes issue as kids with autism grow up

Timmy Caster on his backyard swing with mom, Krissy. The yard is securely fenced in to ensure the boys’ safety. He and his brother both have been diagnosed with autism. (Ruth Mariano Photo)

Hooksett While many Hooksett parents and leaders are discussing high school options, overcrowding, potential “pay for play” for band or sports, and all the topics that have become part of school board meetings and water-cooler fodder, Hooksett’s Caster family has been having an entirely different conversation: How will their children survive when they leave Hooksett? This is not a rhetorical question.

Krissy and Steven Caster’s sons, Jimmy, 14, and Timmy, 11, are autistic and suffer from other severe and life-threatening illnesses.

Timmy, who was born with a heart defect (to this day, he has three holes in his heart) has also been diagnosed with celiac disease, an intestinal disorder that can cause pain and malabsorption of nutrients that can ultimately lead to many other problems. Timmy became emaciated and dehydrated. Even “his bones would hurt,” said Krissy.

Timmy then developed a swallowing and eating disorder, requiring his family to puree all his food. “In just the last year, he started eating table food,” said his dad, Steven. “Fairly crunchy, non-pureed stuff.”

In contrast to all Timmy has had to endure, “autism is nothing,” said Krissy. “We were trying to save his life.”

To those around them, however, the boys’ autism is what sets them apart from others and what makes integrating the boys into the school system so much more of a challenge. Both boys are non-verbal; they can make some vocalizations, but are unable to form discernible words.

The American Psychological Association describes autism as “the most severe developmental disability … autism involves impairments in social interaction – such as being aware of other people’s feelings – and verbal and nonverbal communication.”

To communicate, Timmy uses a Picture Exchange Communication System, which is simply a book that he can carry with him that has various key words pictured on small removable squares stuck to it with Velcro strips. The squares may have phrases like “I want” or “I feel” or images of specific foods, toys, clothing items, a bathroom, or other squares from which he may choose.

He places these squares onto the Velcro strip to formulate sentence sequences, such as “I want sneakers.” As Timmy matures and his vocabulary expands, new squares may be created and added to his book.

Their older son, Jimmy, has advanced now to a computerized, three-tier version of a system called a Vantage Life device which uses a Language Acquisition through Motor Planning (LAMP) approach.

His device looks almost like a McDonald’s register with photographs or icons of specific things for him to identify.

He might choose the Feelings tab or a tab for Books, Music, Nature or Colors as just some examples. Once he selects his first choice, a new screen pops up with additional options for that choice. “I want” might bring him to “food” for example, and then the third group in the sequence might bring up food choices.

Because the options can be updated by Krissy on her home computer and synchronized with Jimmy’s LAMP device, some of Jimmy’s favorite phrases address his desire to go to the Goodwill store, where he enjoys interacting with the workers and shopping. There, Jimmy uses his own store credit card with great pride and responsibility. He also loves Applebee’s, where he is greeted with warmth and a sense of belonging.

With the boys now able to communicate with their individual devices, their parents are looking at how they can most effectively integrate the boys into society. Krissy worries about when she and her husband can no longer care for the boys.

“What happens to them?” she asked.

In looking at their future, Krissy and Steve Caster want to make sure there are services, housing and necessities available to them. They want the boys to be able to work and integrate with society.

The first step in integration, however, is their education. Both parents have been thrilled at the professionals and services they’ve received through the Hooksett schools.

“There’s creativity and flexibility in their programs,” said Krissy. “They do an amazing job.”

They’re even working on a garden for Timmy to plant, grow and ultimately cook his own vegetables. Hooksett educators “are looking at the ability, not the disability,” said Krissy. “They’re in the trenches with us,” she said.

With Jimmy now looking at high schools, however, they’re finding that “there’s no template out there now for students with autism,” said Krissy. “It feels like we’re starting from scratch.” In looking closely at their high school options, they have chosen Pinkerton “because they have a work-to-learn program which is hands on,” said Krissy. “They have a system in place, up and running. They start with a hands-on job at the high school.”

The student masters that tier of the program and then goes into the next tier – working at other schools in the community. Then, they “go to places like Shaw’s and businesses within the community,” she said, that have partnered with the school.

By integrating the students in this vocational program, her sons can learn skills necessary to becoming independent.

The Casters have done all this research for their boys, but lament that it has been such a struggle.

“When our kids are born,” she said, “we’re not thinking about high school, five years from now, 10 years from now.” For her family, “this high school thing just comes up and it just hit us in the face.”With the decisions being made now for Hooksett high school students, Krissy encourages educators and parents to consider the unique needs of special education children.

“They have a right to be here as much as anybody else,” she said of her sons. “We get one chance,” she said. “We can’t blow this” because the children have to move out of Hooksett. “We have to get this right the first time,” she said. “There’s no going back.”